Friday, April 3, 2015

Chapter I of A Mother's View on Spina Bifida

1969 – 1976 (in the
beginning)

Imagine a thinly
carpeted, fiercely cleaned floor of a living room in a tract home in
West Texas in the late 60's. There I sat, along with Paul, my husband of six months.
We were inhabiting, for just a portion of the summer, the home of my in-laws. My father-in-law,
Doug, was working in Alaska while Bess kept the home fires burning. This was a two month extended visit before Paul and I
were to move to Lexington, Kentucky. Paul had just completed his BA
in Austin and was working a summer roustabout job in the oilfields of
west Texas before our relocation to Kentucky. That summer was like many before when he worked out in the hot sun, acquiring several severe sunburns on his face and chest, showing evidence
that attested to his hard labor on the West Texas oil rigs. Post
Script: Those sun burns were likely the cause of his melanoma cancer,
according to William Robinson, MD, The University of Colorado
Medical Center. The melanoma found in 1983 eventually killed Paul in
1986. Paul, Bess and I were watching television, that exciting, momentous event of the
landing of the Apollo on the moon. It was in the heat of that July
summer in 1969 when all things seemed possible to me, and only a few
minutes before the words of Neil Armstrong were spoken to the world
when he declared “that's one small step for man; one giant leap for
mankind.” All the world was astounded at this accomplishment
except for a few who thought that perhaps this was some sort of a
conspiracy theory concocted about “a man on the moon.” Bess was
actually one of those non-believers, although it was much later that
Paul told me she thought it was just a media blitz, that man on the
moon.

Bess was born
before 1920 and had lived with her mother and sister in a fatherless
home. These three endured the Depression Years and it showed in how
she so sparingly lived. Having grown up to be thrifty, Bess saved
plastic Wonder Bread bags, used tin foil, and coupons of any nature
if a few cents might be saved off list price. She judiciously pasted
green stamps into the little S&H books, looking forward to what
her stamps might be traded for at the S&H center on 8th
Avenue in Odessa. Pots and pans, comforters, sheets, and other
mostly household items necessary for homemaking, all could be had for
exchange of her neatly filled green stamp books, carefully hoarded
until redemption.

Bess was tidy and
organized, a proficient housewife, a good cook, and generous in her frugal own ways. Her fried chicken, mashed potatoes and thick cream gravy,
heavy with black pepper, were some of my favorite dishes. I
generally kept out of her way when she cooked and while she watched
her television soap operas on weekday afternoons. Bess entered
contests, all kinds of give-aways, clipping notices from magazines
and newspapers, filling out the forms and hand lettering the
envelopes. She did this every day over probably a five year time
period; her grandest prize winnings were a washing machine/dryer set
and a new car.

Summer passed, and
Paul and I moved on to Lexington in late August, taking two days to
drive there in our '62 Chevy coupe, pulling a U-Haul trailer holding
a few of our belongings. We must have looked like itinerants from
The Grapes of Wrath as we slowly wended across country, our
typewriter, clothing and boxes piled high on the back seat of the old
Chevy.

We rented an
upstairs apartment in a two story house on Wabash Avenue, several
miles from the university. We would have preferred living in married
housing on the UK campus, but we owned a little dog, and the housing
department rules barred animals from student apartments. So we
settled into that one bedroom, small kitchenette apartment. I found
a part-time job on campus at the university hospital and carried a
full load of course work. Paul had a teaching assistantship, also
working on his graduate degree. Money was tight, but this was not a
new situation for the two of us. And Bess sometimes, most weeks,
sent a $5 bill in her letters to Paul and me. That $5 was usually
spent on hamburgers at McDonald's, and sometimes we went to a movie.
Life was pretty good, as I remember.

Contraception for
us in the late 60's was that of the birth control pill, a fairly high
dose of estrogen used in that decade. It was only later that the
negative side effects of this type high estrogen pill were
announced. At my doctor's appointment the prior year, I had been
warned to quit taking the pill for a three month time period after a
year of use. It was a standard recommendation then to give the
female body a break from constant use of estrogen. So I quit taking
the pill after the requisite time period and relied on other less effective forms of contraception.

We drove down to
Texas for the Christmas break, visiting all our family. The school
break lasted about three weeks and I recall not feeling well on the
drive back to Kentucky after the holiday school break, thinking maybe
I had a touch of flu that was going around that season. It was
months later that I determined that little sick spell was actually
probably morning sickness.

In the spring,
after having felt ill for a number of weeks and having gone to the
student clinic yet again, a pregnancy test showed positive. Paul and
I had never discussed having children, not even prior to our getting
married. I was 20, he was 23, and the possibility of becoming
parents had not been considered by either of us. And I had always
used contraceptive measures, so it was a moot point to discuss
children at this stage of our lives, or so we thought. Completing
our respective educations was the priority then.

It was while I was
at my part time job when I received the phone call from the student
clinic and was told that the blood test taken to determine pregnancy
had come back as positive. How could this pregnancy have happened?
Upon hearing this news, I was dumbfounded, devastated. I believed I
could not continue with my education now that I was going to be a
mother.

These thoughts were
running amok in my head as I finished my work shift and drove back to
our apartment in the chilly spring air. Steering down the curving
street toward home with tears in my eyes, I felt desolate at
receiving this news of an unwanted pregnancy. How would Paul react
when I told him I was pregnant? I was so unhappy about this
situation, crying and praying for a sign that I could get through
this ordeal, give birth to a baby, become a mother, and that my
schooling was not ending. It was then I noticed a bird, flying just to the left of my driver's side window.
It was perhaps twenty feet away, flying toward the west, and it had a
blue breast. I took it as a sign that all would be well and was
shored up by this sighting of a “bluebird of happiness.” It was
a sign I have never forgotten. This sign, a bird in flight, touched
me in a place of deep despair, giving me consolation. That next school semester continued, with little difference in my life other than an
expanding waist line and the continuing pregnancy. Paul did not say
much about the impending birth of a baby, or the pregnancy, but I
knew he was worried about what the next year would bring. His draft
number was to be called up within the next month after his
graduation, at the simultaneous time of expected birth. I fretted
about his being drafted and dreaded the time when I knew we were soon
to be separated. Anticipating being a new mother, I was not looking
forward to having the baby in his absence. It was the late summer of 1970, the war in Viet Nam was in full swing and Paul's
draft number was scheduled to be called soon after his graduate
school status extension ended in August. Jane Fonda railed against
the soldiers, men were drafted or volunteered into the armed
services, death tolls were counted on the Viet Nam front as the year
rolled on. Returning soldiers were not welcomed home, PTSD was not recognized or treated, and draft
dodgers went into exile in Canada or elsewhere. He assumed his
fate was settled after he was drafted, at least for those next two
years as he served his time in the Army. We made
tentative plans for the year after the baby was scheduled to arrive
and while he would most likely be in Viet Nam.
My parents had divorced in 1965. I was to go back to
Texas and live with my father in the Ft. Worth area where he was then
working. Dad was selling and renovating houses, and I planned on living there with him
and the baby. Living with Mother was not an option
because she had a one bedroom apartment and also had a part time
position as a house sitter and companion to Mrs. David Tandy, whose
husband was the founder of Tandy Leather Company in Ft. Worth, Texas.
I never even thought about living with Bess after the birth of the
infant, although that might have been an option also.
But none of those scenarios occurred, and those tentative plans were never put in
place.
In September of 1970, a month after the baby was supposed to have been born,
calculations made by the “best OB in Lexington,” that our baby
came into the world after just a few hours of labor at the Albert B.
Chandler Medical Center on the campus of UK. I knew only a minute or
so after she was born that something was wrong with my baby. She
made a little cry as the nurse was taking her to another area in the
delivery room, away from me. I asked the sex of the baby and if the
baby was healthy. No one said anything for a minute, so I continued
asking. I was told the baby was a girl, and that they would talk to
me about her as soon as they could. A few minutes later a doctor
already there in the delivery room said there was something wrong
with her back, but she was breathing fine. He came over to me and
said he would call in another physician to talk with me. His
demeanor said it all: downcast, and with a broken voice. That was when I
knew something was wrong, very wrong with the baby, that child I had
never even asked for.A nurse must have transported the baby to another unit, because I did not get to see her until a day after her
birth. My feeling were of guilt, guilt that I had done something
wrong during the pregnancy, and guilt that I had not wanted a child.
(I chewed on that guilt for many years, its taste creating a villus
bile that often set me on edge when I would see a child without
defect, a product of lucky benevolence.) A specialist came in to talk with me in the recovery room and explained that our baby
had a birth defect termed “spina bifida with myelomeningocele.”
I could not comprehend at first what he was saying. I expected a
baby, yes, but not one with problems needing specialized care. I had
never before heard the term “spina bifida.” The doctor went on
to say she would likely also develop hydrocephalus. I was
heartsick, because I did understand the ramifications of the
anachonistric term “pumpkin head,” because I had attended first
grade with a child who had a brother at home, shut away with
untreated hydrocephalus. (See Chapter on "Shunts")Here is a brief definition of the birth defect from KidsHealth.com:

The
term spina bifida comes from Latin and literally means "split"
or "open" spine. This defect happens at the end of the
first month of pregnancy, when a baby's spine and spinal cord (a
bundle of nerves that runs down the center of the spine) are
developing. The nerves that branch out of the spinal cord may be
damaged.

Sometimes,
the defect causes an opening in the back, which is visible. The
spinal cord and its coverings sometimes push through this opening.
Other times, there is no opening and the defect remains hidden under
the skin.

Depending
on the severity of the defect and where it is on the spine, symptoms
vary. Mild defects may cause few or no problems, while more severe
defects can cause serious problems, including weakness, loss of
bladder control, or paralysis. Children with an exposed opening on
the back will need surgery to close it.

Hydrocephalus occurs in 95%
of children whose back is closed closed by surgery.

We named the baby
Juliet Parke. Julie's meningocele, the worst form of spina bifida,
was closed when she was four hours old, and a ventriculo-atrial (VA)
shunt (See Chapter on “The Shunts” for more detail) was placed in
her skull on her fourth day of life to ameliorate the effects of
hydrocephalus. Surgeries were performed by Gordon Brocklehurst, MD,
a renown neurosurgeon from the United Kingdom who had recently
started a specialized unit at the Chandler Medical Center for infants
born with spina bifida. He was one of the few surgeons around,
certainly in Kentucky, that performed the specialized neural tube
defect repair surgeries necessary for sustaining life of infants born
with this birth defect. At the time of Juliet's birth, one in one
thousand babies was born with spina bifida. We felt fortunate Julie
was born at this teaching university hospital with state of the art
care available.
During the '90,s the Spina Bifida Association lobbied the government to require
supplemental folic acid be added into foods supplied to the U.S.
because folic acid in the diet of pregnant women was found to greatly
reduce the incidence of neural tube defects. (See “Resources”
appendix). Beginning in 1996 the U.S. Food and Drug Administration
(FDA) began to require that folic acid be added to specific flours,
bread and other grains, fortified because they were staple products
for most of the U.S. population. If only I had known prior to
pregnancy to supplement my diet with folic acid, perhaps all our
lives would have been different. After Julie's initial surgeries were completed, we brought her back to our upstairs
apartment in Lexington. Paul spent time and efforts getting a
hardship deferment from the Army, which was granted in due course
after Dr. Brocklehurst had written a letter on his behalf requesting
a deferment from active service due to the fact he was needed at home
to help care for a handicapped child. Then Paul began looking for a
job teaching at the college level and relatively quickly acquired an
assignment at Lamar State University (LSU) in Beaumont, Texas for the
term beginning in 1971. Our beloved little dog was extremely jealous
of Julie, and jumped on her a few days after we brought her home. We
subsequently had to find another home for the dog because I was
fearful of further damage to our baby. Upon reflection, the sorrow of giving up our pup almost surmounted that of having birthed a handicapped child. Or was it a transference of sorrow, a trade off of a happy and loved animal for the acceptance of a new human life with seemingly insurmountable problems? This trade off was difficult for me as a young woman with few life skills under her belt.

In
December of 1970, we moved to Beaumont and Paul began his new job
teaching sociology at LSU. Julie had one shunt malfunction
and subsequent revision while we lived in Beaumont. At six months of
age, her eyes looked “buggy” and her fontanels bulged upwards.
Her shunt was repaired in a straightforward manner with no ill
effects. I thought then that a shunt revision would result in her
death. I have no idea where that idea came from, but I had no
experience whatsoever in children with hydrocephalus, and I knew it
was a risky deal having that shunt reconfigured by a neurosurgeon.
Just the word “neurosurgeon” was enough to put panic in my soul! A new AV shunt (see chapter on “The Shunts” for further
information) was placed in her skull, and the bulging fontanels
diminished in size within the first day after revision. She came
home, back to her crib, after just a week in hospital.

We
stayed at LSU two years while he taught and I finished my
sophomore year of college at LSU at nights and in the late afternoons
while he provided care for Julie. Julie had physical therapy twice a
week, and I also worked with her daily on muscle coordination
exercises. The cockroaches in Beaumont were so invasive that our
apartment was sprayed monthly. They were not only invasive, they
were as large as a small mouse, or so I thought. I kept careful
watch on Julie, daring the roaches to rear their ugly heads.

In the summer of
1972, Julie spent a week with Bess in Odessa, just the two of them
being a grandmother and grandchild together. My father-in-law worked
out of Barrow, Alaska on the oil pipeline for about ten years but was not back in Odessa at the time of their grandchild's visit. It was the
first time Julie had been out of my care and I was relieved to have
some portion of my life not involved with either being a full-time
mother, or as a part-time therapist for her. I recall feeling a bit
guilty about this new-found, week long freedom, but it quickly
passed, as ephemeral as a cloud in the sky moving on. I was worried
Julie's shunt would malfunction and Bess would not know what to do
for her. But the week with her grandmother passed without incident, and we drove back
to Odessa to retrieve a thriving Julie, none the worse for wear. Julie began saying words at the appropriate age and followed most
guidelines for normal development, other than her legs did not
function normally.

By the time we
moved from Beaumont in 1973 and into our first married housing
apartment in Lansing, Michigan, Julie had learned to crawl in a
rather odd manner. She used her forearms to propel herself across
the floor, making each movement in a deliberate pattern on one elbow
in front, pulling herself forward, then taking the opposite elbow
forward, pulling the other side of the body forward. We termed it
the “alligator crawl.” This move was learned in her twice weekly
therapy sessions. I also worked with her daily on strength training
and balance, and she became stronger and faster at pulling herself
forward on the floor.

In Michigan, in
1974, Julie began a half day session for children with developmental
delays and was bused in a little white van to an older building,
Walnut Elementary School, half way across town. At four, she liked
her school and her therapists and teachers. Julie carried her
disposable diapers in a cloth bag with her special stuffed animals
each day of the bus. (Spina bifida results in loss of
bowel and bladder control, so she was diapered for the first five
years of her life; she learned to put on her own diapers by the time
she was three.)

Julie began
socializing more with other children at Walnut Elementary, received
physical therapy there, and I helped start a support group for
parents who had children with spina bifida. In this group, we shared
developmental milestones of our children, and both the kids and
parents benefited from being with others of like minds with similar
problems. If only I had been able to find such a supportive avenue
when she was an infant.

In Montana, in
1975-1977, Paul had finished his PhD and was working for the Federal
Goverment. Here is where Julie spent two years in kindergarten,
repeating the class a second time because she needed that extra
socialization and general time to “catch up.” Or that was the
thinking back then. She again carried her diapers with her the first
year of kindergarten, but by the time she was just under six years of
age, she had learned to independently catheterize herself every four
hours in the teacher's bathroom, where she was afforded more privacy. Julie catheterized herself with a six inch transparent glass catheter,
and I still cringe to think of the safety factors involved with glass
in the urethra. But in the 70's, plastic catheters were not in use,
especially for children. The glass catheters could be used for a
day, every four hours, and then boiled and kept in alcohol until
needed. We usually had a supply of four or five boiled glass
catheters on hand. It was only in the 1980's that disposable
catheters came into common use. (See Chapter “Catheterization”
for more information)
Julie continued tohave issues with bowel and bladder control. Urological advances, and
further problem progression in this area led to further surgeries and
ostomies for both bowel and bladder.

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